Last June we took Oscar to the docs for yet another infernal infection, poor mite, and during the routine check of ears, throat, lungs etc the doctor found a heart murmur*.
That moment is etched in my heart forever. All the clichés came true in one fell swoop. Time stood still. It felt like an endless hole had opened up beneath me and I was a heartbeat away from tumbling in. I turned to stone. I was unable to speak. My mind fought between hysteria, panic and total, utter calmness. The calmness won, because my Mom brain took over and said very sternly LISTEN TO THE DOCTOR. So I did. Afterwards, in the car, Pete said I shouldn’t be afraid to ask questions. But I don’t even know what questions to ask! I wailed, as the floodgates opened and I sobbed all the way home. I don’t think I have ever been so scared in my life.
That fear only lasted a few minutes, as both the doctor and then Pete reassured me how common heart murmurs are in small children. How they can be temporary as a result of inflammations due to very ordinary infections (which little children get A LOT), how they can grow out of them and how, nine times out of ten, they are what is termed ‘innocent’.
That’s as maybe, but for those few moments I felt a fraction of what it must be like to be told your child is very sick. I felt a sudden rush of sympathy for parents of seriously ill children, for whom those few seconds and minutes stretch into days and weeks and even years, if not a lifetime. How on earth do they do it? I can’t even begin to imagine what it takes.
Innocent or not, I need a definitive diagnosis. It is in the back of my mind ALWAYS. When he gets tired, or loses his appetite, I can’t help but wonder, is it related? Is this the first step to a more serious diagnosis? Is there something wrong with my child that I can’t fix?
We are in the system. A referral letter is sent. An appointment will be made with a specialist. We will get to the bottom of this. A definitive diagnosis will be made. This is reassuring. What no-one told me however, is how fucking long this will take. That I will likely wait nine months to A YEAR to even hear back about an appointment, never mind actually attending the clinic or getting results. What the actual fuck?
In December I’m a bit frazzled and, as always, worried about Oscar and this infernal diagnosis. At a GP visit for something else I get him to check and the murmur is still there. Pete agrees that we should get a private appointment and he seeks out a Paediatric Cardiologist for met to contact. It is three days before Christmas and half past five in the evening when we rock up to the 352 Clinic. I don’t actually know what happens but after having a hot chocolate from the very exciting vending machine in the waiting room, and waiting over 40 minutes, Oscar goes mental in the doctor’s office. I mean properly mental. He’s screaming and wriggling, running for the door and refusing in every single way to co-operate in any way whatsoever. I don’t know what to do. I’ve never seen him like this. Was it the hot chocolate? The long wait? The proximity to dinnertime/Christmas? Anxiety about the doctor or the equipment? I have no idea but after 10 – 15 minutes of coaxing, cuddling and a bit of leaning on his legs so the doctor can at least listen to his heart, we all give up.
I could cry. For all sorts of reasons. This was supposed to be my diagnosis, the thing I’ve been nursing for months, the thing I’ve been hoping for and dreading and needing for what feels like forever but is in fact only 6 months. I say only, but in fact 6 months in a three year old’s life is a lot, actually.
It is not to be. He can’t make a full diagnosis without the ECG and the other thing, whatever it is; I can’t seem to make my ears work, I’m so disappointed. He does say it is most likely to be innocent and if pushed, that is what he would say. But he can’t confirm it at this point. So. That’s it.
I’d make another appointment but what if it happens again? I paid £150 for pretty much nothing at all. I can’t do that again. So we wait for the NHS appointment to come through. It’s almost June 2016 and we are still waiting.
Read more here about the NHS waiting list in Northern Ireland.
*A heart murmur is where your heartbeat has an extra, or unusual, sound caused by a disturbed blood flow through the heart.